Thursday, April 26, 2007

Are you out there, Mr Politician? OR The support systems that are making me more ill

So. The government has this big 'drive' going on to get disabled people back to work. It's nice that they've found something to keep themselves occupied with over there in Whitehall. Me? I have bigger things to worry about right now. Mostly problems that are ultimately created by, hang on, I know this one - Whitehall. Let's have a look at them one at a time, shall we?

First: the social care package.Reasons for wanting this: it would allow me to become less reliant on my partner, who currently does practically everything for me. I am tied to doing things - from bathing to eating to going to the post office - on her schedule, meaning that I can't live a particularly independent life. Or make my own cups of tea, which is more of an issue. Tea is important.How it would help me to get back to work: I won't be doing any kind of work at all until I am given the opportunity to live an independent life. The inequalities that I currently face need to be addressed, ideally through personal assistance that I can control myself. Cups of tea would be nice, too.Progress on getting this: Slow. But happening. Apparently my complaint (seven pages long, with about twenty pages of supporting evidence) is being taken seriously. This could, of course, mean absolutely anything - and we might find I get turned down next week (or that they find six more weeks' worth of reasons to ask for 'more information'). Not sure what would happen then. I suppose we shall see.

Next: Incapacity Benefit. Reasons for wanting this: I'd like to be able to buy food. Perhaps the odd box of tea, too.How it would help me get back to work: If I can stop fighting for all of this 'support' and start getting a REST, I might actually have a chance of being able to direct my limited energy towards constructive things. Like teaching the nation's youth, perhaps. Gosh, there's a novel idea.Progress on getting this: I'm still waiting to hear anything back from the benefits people, who asked me to fill in some kind of 'capability for any work' form, even though I'd only been on benefits for six weeks (these forms are supposed to be filled out after 28 weeks). So, if they take me off benefits now, I shall be really angry. I might throw things. After that, I might set up camp outside the grand gates of Downing Street, in my wheelchair, and see what they do with me next. I'm sure I could get some of my mates to volunteer to bring me cups of tea.

And finally: Disability Living Allowance. After over two months of hellish stress while I tried to get my DLA care allowance raised from 'lower' to 'middle' rate, I've just this morning been told that they will not reconsider my level. The next step is to appeal - if my mental health can deal with that process. It may well not survive it.Reasons for wanting this: As other people with chronic health conditions reading this will know, disability is not exactly the world's greatest leveller. The costs involved in just being a disabled person are quite amazing - more so if you can't work. Which is even more fun when the reason you can't work is that you don't have the time or energy to do any 'recovering' because fighting the systems that are supposed to provide you with 'support' is making you more unwell... Explain that one to me, Mr Politician.How it would help me get back to work: See above. The three-hour panic attack I had after learning today that my DLA reconsideration attempt had failed is another clue. These benefits application processes have been far more exhausting, over the last few months, than my ten years' experience of teaching 16- to 19-year-olds ever was.Progress on getting this: Um... Since the vast majority of people are turned down at the first application and have to appeal, I should probably be pleased that I got the high rate mobility and low rate care allowances that I already receive. So why does today's decision bother me so much? I think because it's yet more proof that nobody cares. That you can work in the public services and 'give back' (whatever that means) for years, but the minute you get ill and need support yourself, you won't get it. That once more I'm being made out to be a liar, or a whinger, or a scrounger. None of which I am.

Because, you see, I'm barely coping - I'm not living. But I want to live, and have an independent life, and teach, and travel, and see my friends, and go for a drink in the pub once in a while, and WORK, and do all those things you're not supposed to want to do when you get ill...

...or are you? It's all quite confusing really.

The government's continuing inability to give me the support that is supposed to be available to disabled people in order to allow us to live independent lives is disabling me. Funny, that. So, no, Mr Politician - I will not be going back to work next week. Or the week after. Or any time soon, unless you decide to give me the support that I need to do so.

Meanwhile, I'm off to work out whether my hands are going to let me make my own cup of tea, or whether they will conspire with the dodgy kettle tipper to make me live on orange juice. Since I won't be putting up with any more crushing disappointment today, they'd better be working. Also because the vicar's coming round. Wishing you a good, stress-free day, folks.

I couldn't even get DLA. Even though I fitted the criteria, they said that the help I needed wasn't financial and that it wasn't their responsibility to give my money to live on. For real. Not disabled enough, apparently. Bastards!

Tanya - that's incredible, and appalling. I've heard such horror stories about certain local DLA administrations before - I think I was actually quite lucky with mine. Did you appeal? That can change things. Something like 90% of cases are successful at appeal.

I did appeal, and sadly got absolutely nowhere. I'm incredibly lucky because I've managed to land a job where I get to do something I love (Marketing and PR for a new magazine, and photography) and set my own hours - something that was ONLY possible because of the freak nature of how I got the job and the fact that it was through someone I knew well, had done photography work for in the past and who knew my situation with M.E. because his boyfriend also has it.

If I actually had to venture out there and apply for jobs with people I didn't know, I'd be screwed. I doubt "Well, I'm REALLY good at this stuff, but I can't work long days or two days in a row, and sometimes I get really sick and fall over for no reason, and occasionally go catatonic for short periods of time when my blood sugar plummets and/or my body and/or brain decides I've done enough work (for 'work' read 'sitting upright') for the day" would've got me very far.

The great thing about my situation is that I'm going to offer one work placement a year to a college student with a disability or chronic medical condition so at least I get to help someone else who's going through all the crap that I've gone through.

I've also been asked to give a talk to the support staff at the college I'm at (finishing my course in June, wooo!) to help them understand what it's like trying to cope with the education system when you have a disability. Sadly it's not the support staff that need the talk, it's the rest of the staff who don't give a shit.

The toughest thing about this whole chronic illness deal seems to be that the world in general doesn't accept that we don't actually WANT to be sitting around all day not doing anything. I'd go absolutely mental if I didn't have stuff to do (which was exactly what was happening to me before I started college). People like us, who deal with this crap day in, day out, are the toughest, most determined people around yet we get treated as if we're lazy.